Clinical trials and hospice

lrapp

My dad, age 80, was diagnosed with Stage IV pancreatic cancer two months ago. Since his diagnosis I've been frustrated with the lack of coordinated health care management of his life limiting disease. No doctor wants to discuss anything other than the immediate issue, whether that be a particular test or medication or pain management. After discussions with a specialist, he decided to go on a clinical trial (for pain management). We now realize that as long as he is on the clinical trial he is not eligible for hospice and the associated mental, spiritual, and physical support and guidance they could provide. Where is the place that someone who is terminally ill gets assistance in living the last months of their life? Is there help available to guide a person in reviewing and clearing up legal, financial, spiritual issues? Is there somone who would handle his overall medical condition, not just the clinical trial? I had thought that person was the oncologist and resources that the oncologist recommended, but clearly I was wrong.

Dad also developed blood clots in his leg. The recommended medicine costs $3K per month and the prescription is not covered by medicare. Because he is on a clinical trial he is not eligible for hospice, however if he were on hospice, it would be covered.

I wish I could be more supportive of the idea of clinical trials, but so far it seems like they don't provide anything that someone preparing to die might need.
Any advice, suggestions?